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Karenmodz

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Good morning,
I posted on this forum months ago (I'm sorry - the thread is closed or I would comment again there.)

I am 36 years old, and went to see a neuro in the summer for fasiculations and perceived right sided weakness. He saw abnormalities on nerve conduction (fasiculations and symmetric hyperreflexia) but told me and my husband in the appointment that the EMG was normal. He said "i dont think this is tip of an iceburg."

I was so grateful and happy. However, today I went to see my primary care physician, who reviewed his notes and asked that I get a second opinion from another neurologist. She says the tests showed an abnormality, along with hyperrefelxia and the fasiculations.

She sent me the EMG, which says the following about the abnormalities:
Right peroneal motor response demonstrates...an absent F-wave latency.
Right tibeal motor response demonstrates...An A-wave present.

His notes were:
This is a mildly abnormal study. Nerve conduction show abscence of right peroneal motor f-wave. This is nonspecific and commonly seen in L5 radiculopathy. However, concentric needle exam did not show changes consistent with right L5 radiculopathy. There is no electrodiagnostic evidence for polyneuropathy, myopathy, or progressive lower motor neuron disease.

Now i took the appointment with the neurologist as conclusive. However, my primary says she "is not confident" and wants me to follow up with another specialist at a local university. The neurologist I saw - who did the report above - is, according to his profile, a nueromuscular specialist who attends at a local hospital. So he seems to have the credentials...

While I still have fasiculations every day with no continued perceived/actual weakness, I thought all of this was behind me. Now my primary care physician has opened a can of worms and I am wondering how serious this abnormaility on my emg is. I am nervoussss. Any advice would be sincerely appreciated.

Thank you!
-Karen
 
I can not find a previous post. Did you have a different user name?

Your emg was perfectly normal. That is the needle exam and what matters in ALS. Your nerve conduction had a minimal abnormality that does not raise any concern for ALS, may be a pinched nerve in your back possibly

Your nerve conduction study did not show hyperreflexia or fasciculations. Fasciculations may be noted on emg though apparently they were not according to the report. So apparently they and hyperrefexia were clinical exam findings. Hyperrefexia is often normal , may occur with anxiety and is unworrying. Twitching is extremely common and meaningless
 
Your PCP does not have the background training or education to comment on this. Your EMG states very plainly, in black and white, no abnormality for a progressive lower motor neuron disease AKA- ALS. It does say, however, that there is a mild abnormality for L5 radiculopathy, which could be from a compression on the L5 area of the spine. You have evidenced nothing at all regarding ALS in your symptoms-at all. As well, symmetrical hyperflexia typically points away from ALS and 70% of people have fasiculations.

Please take the word of your neurologist over your PCP. Your neuromuscular specialist has an additional 5 years of education and training than your PCP and the folks here don't see ALS, either. However, if it would put your mind at ease, get another EMG, but i feel there's most likely better things to spend your money on.
 
Thank you both so much for your comments. It is hugely reassuring!! Yes I was a little taken aback by my pcp. I wish I could copy/paste the whole report but it is in a patient portal and Impossible to do. I have a history of back problems, hip arthritis, and then obviously the fadicilations and hyperreflexia. It was my PCP who pushed me to get the emg in the first place, but then today she said EMGS ‘are subjective’ and can be read different ways. I left feeling confused and deflated, to say the least.

And Nikki, oh gosh yes! I did comment under another username - KarenMary. I’m so sorry! I posted in the summer of this year, 2018. I must have forgotten the ow to one or the other account. Sorry for the confusion.

Thank you so much!
 
Darn it! I’m so sorry I posted under two diff names. I changed my UN before posting my first post bc I wanted a slightly less identifiable username. I understand if you have to delete and/or kick me off the forum. So sorry! I have only ever started one thread prior to this, under username karenmary.
 
We don’t ban people for honest errors. However I am going to ban the other account simply to eliminate the possibility of you going back and forth- not that you need to. You are clear

Here is the other thread https://www.alsforums.com/forum/do-i-have-als-als/41914-neuro-visit.html

Fortunately, although we won’t kick you off as you clearly did not mean to deceive you don’t need to be here. Enjoy your family and have great holidays
 
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You could screen shot the report or any section, and attach it as an image, if you want, if the text is not selectable. You can also use your browser to "print" to pdf. But as noted, you are in the clear.

Best,
Laurie
 
Thank you so much. Wishing you all a peaceful holiday. Thank you so much for the clarity and reassurance.❤️
 
Hi again all,
As I noted above, I had an emg in summer that said no als. My primary care physician wanted me to get a second opinion based on some abnormalities she saw. After thinking it Over, I decided I was confident in my first neurologists diagnosis and didn’t need a second opinion. In the meantime, I’ve found out that I am pregnant.

Yesterday, a bit out of the blue, I got a call from the Local university’s ALS clinic. My doctor had sent all my paperwork to them and they were calling to schedule an appt. I was immediately both terrified and annoyed that my doctor had done that. they happened to have an appt this morning so after much back and forth I finally decided to take it, as a consult.

Well I’m just leaving and I’m feeling - again - concerned.

The doctor I saw did see:
-Hyperreflexia, bilaterally, both legs (3/4) - she said i wasn’t as hyperreflive as she expected, and that it may not be abnormal for someone as thin and young-ish as I am (she said the rest of my reflexes seem normal)
-2 ‘beats’ to my eyes looking left - she said this could be related to vertigo (which I do get from time to time but have no dizziness/headache now)
-clonus - 2 to 3 beats in left leg. I’ve not seen this in me before.
-bodywide fasiculations - she just took my word for those

Other things that bode well- she said she did not see ANY muscle atrophy or weakness.

However, by the end she seemed to not know what to do with me. I could tell she really didn’t want to stress me out bc I am pregnant. She did say ‘I don’t think you have als...but textbook says a patient like you needs to be retested.’ She said I had a very ‘odd’ conglomeration of symptoms, and that we had to ‘be sure.’ So they scheduled me for another emg/ncv and she mentioned specifically testing my tongue (my last neurologist did not test bulbar region) though she said my tongue looked fine and she doesn’t see/hear any problems. (I had mentioned to her that I’d heard bulbar can present with bodywide fascis first and that sometimes I worry I’m not talking correctly, but mostly when I’m nervous/dehydrated and no one has ever noticed...she nodded.)

I am a bit of a mess right now. I’d really hoped it would be a bit more conclusive (‘we don’t need to retest’) and now I’m very worried that the appearance of clones IS actually a sign of change/progression.

I’ve never really ‘gone off the deep end’ with this before, but I’m particularly terrified now that there is actually a chance that als is indeed what I have, appearing first in UMN

Please- any advice would be greatly appreciated. I can’t believe I’m having to do this Again, while pregnant. And I can’t even let my brain think forward to the possibility of als with pregnancy...
I’m sorry to be taking your time but thank you so much in advance.
 
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You should have been told that 2-3 beats of clonus is considered normal. Only sustained clonus of 5 plus beats would be pathological.

Congratulations on your pregnancy. Please do not stress. Let us know after your emg but I expect you will be reporting good news
 
Thank you so much Nikki. Thank you for all you do for everyone who posts here. ❤️❤️❤️
I am hoping for good results. I wish there was a way just to push something out of one’s brain for a few weeks ;) that would be helpful.
Thank you again!
 
Congratulations on the forthcoming new arrival, Karen!

One obvious way to overwrite the EMG appointment for now (and I agree with Nikki that you may expect to be reassured) is to dive into baby names, etc. for yourself, even if you don't share the news widely as yet.

From what you have said, I think everyone is being very conservative, and perhaps all the more so since you are pregnant. There is an expression, "normal variant," that recognizes that we can be different in ways that aren't clinically significant, though we can perceive them and they are very real.

Of course, since you have some pre-existing medical issues, I would make sure these are fully documented in your OB's records and that you have discussed them with her/him.

Best,
Laurie
 
Thank you laurie!! I really appreciate your reassurance and advice. ❤️ That’s a good idea - I hadn’t even begun to think about names �� I hope you are right, and take comfort in your comment about being a ‘normal variant’ and my doctors’ conservatism. I honestly hadn’t even thought of that. Thank you!!
 
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